Reagan’s Fight Against Juvenile Arthritis

Reagan’s Fight Against Juvenile Arthritis

July is Juvenile Arthritis Awareness Month, and as the end of the month approaches, we wanted to share the story of a brave, strong, and resilient 17 month old baby girl, Reagan Brown, who suffers from a rare form of juvenile arthritis.

In November of 2012, a wicked stomach virus plowed its way through the Brown family’s house, infecting everyone. Worried for their new daughter’s well-being, parents Emma and Lee rushed Reagan to the hospital when they noticed a fever and how she seemed to be in constant pain. Doctors diagnosed Reagan with an ear infection and sent her home with a prescription of antibiotics.

After two days on the antibiotics without the slightest bit of improvement, Emma and Lee took their daughter to the hospital again. While they waited in the emergency room, little Reagan would cry every time Emma held her in a new position. Her toes were curled. Her ankles were stiff. She would cry if she moved even in the slightest. The Browns knew something was wrong, but did not know what.

reagan
Reagan in the hospital on a good day.

After a myriad of blood tests, Reagan’s doctor detected off-the-charts-levels of inflammation and sent her to a local children’s hospital. It was suspected that Reagan suffered from Kawasaki’s Disease and thus spent two weeks in the hospital with a high fever, rash, swollen lymph nodes, enlarged spleen, high inflammation, and a high white blood cell count among other erratic test results. She was only nine months old.

Reagan was treated with intravenous drugs and a round of Remicade, a chemotherapy-grade therapy drug that suppresses the immune system, as Reagan’s was attacking her own body.

“The hospital stay was a roller coaster of emotions,” Reagan’s parents said. “Many times we thought she was getting close to being healthy and would be sent home. Other times we were told it was just a fever of unknown origin and would be discharged with no real answers.”

However, the Browns’ prayers were answered when a MRI came back and showed that there was fluid on little Reagan’s knees and hips. She was then diagnosed with Systemic Onset Juvenile Idiopathic Arthritis (SOJIA).

SOJIA is a type of juvenile rheumatoid arthritis that not only affects bones and joints, but also internal organs such as the heart, lungs, eyes, liver, spleen, and the nervous system. If not treated carefully, SOJIA can bring about permanent abnormalities and defects within the body. After doing their homework, the Browns now take the proper precautions and conduct weekly blood tests and monthly visits to their pediatric rheumatologist to ensure their daughter is progressing positively.

“It could be the battle of her life, or at any point she could go into remission,” the Browns commented. “Patients diagnosed with this type of juvenile arthritis have a 50/50 chance of becoming disabled as they battle it throughout life, or merely outgrow it with age.” The Browns are hoping for the latter.

Unfortunately though, Reagan has a long way to go. She experiences pain with any shift in barometric pressure (rain, snow, etc.), but continues to take medications that do their best to improve her case. She also works with a physical therapist through a government-funded program for children with disabilities. At only 17 months old, Reagan still has yet to walk, but her parents are hopeful and are confident she’ll take her first steps soon.

Throughout it all, Reagan has proved that she is a fighter. Even though she is only a year old, she has showed everyone that she won’t go down without a fight. She may have juvenile arthritis, but juvenile arthritis doesn’t have her.

To support Juvenile Arthritis Awareness Month, make a donation and spread the word that we need a cure.

To share your own arthritis story, contact us.

ANRF
Article Author
Arthritis National Research Foundation
arthritisresearch@curearthritis.org

The Arthritis National Research Foundation's mission is to provide initial research funding to brilliant, investigative scientists with new ideas to cure arthritis and related autoimmune diseases. Writing articles about the patients affected and the science being done to find a cure shows why we need to come together to #CureArthritis!

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